Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Monday, June 2, 2014
Seven Quick Prayer Requests
1. Alex has an intermittent fever and cough so he's off to the doctor this afternoon. He actually told me this morning he didn't want to stay home, that he misses his teacher. I can't remember the last time that happened.
2. We meet with Alex's teacher and case manager on Friday for his IEP meeting to plan for next year. We already know he will be with a different teacher in an intermediary disabled classroom, back with some of the friends he left behind last year, which is good. But it will be a new teacher for us.
3. Miranda was supposed to have a well visit at the doctor's today but Alex is taking the appointment because he's sick. I still need to reschedule that for her.
4. I'm still praying about what to do with the psychiatrist we've introduced to our cadre of doctors. We've an appointment on the books for next week and I think it's going to be and one of the kids who sees him, but I'm not sure which one to take with me.
5. My mother is in California hanging with my 2 year old nephew Colin while my brother goes to a conference and my sister-in-law enjoys some time away from the darling boy.
6. My mother suggested that my father and I paint my kids' rooms while she's away, so he doesn't get bored. He's doing most of the work and definitely not bored.
7. Marshall's birthday is next Saturday and out best present to him will probably be to let him keep working on the bus. But life in his office is always exciting, so please pray for peace and wisdom for him, always.
And here's Jen!
Monday, May 26, 2014
Paris in the Springtime
1. The French Open started yesterday so I'm busy watching all those lovely hours of coverage, so this will definitely be quick takes. Here are my top 7 movies to see this summer: Captain America: The Winter Soldier
I saw it last month, as previously mentioned, and it was excellent. I never get tired of watching Chris Evans' take on Cappy or Samuel L. Jackson as Nick Fury.
2. Godzilla
I saw this in Saturday with my honey and really liked it. I did watch the original Gojira on Friday and shrugged.
3. X-Men: Days of Future Past
I saw this on Friday with my mother and loved it. I was thinking yesterday how time travel in fiction allows us to redeem the past and heal the future, those things that in real life, only Christ offers.
4. Edge of Tomorrow
Every time I see this trailer, I become more interested. The film opens June 6th.
5. Transformers: Age of Extinction
Apparently, I can't pass up on something shiny. Opens June 22.
6. Lucy
So much for my determined avoidance of Luc Besson. This film opens July 25.
7. Jupiter Ascending
For the record, I loved Speed Racer, but I never saw Cloud Atlas. This film also opens July 25.
Bonus 8. Guardians of the Galaxy
I have become a devoted Marvel fan-girl.
And here's Jen.
Monday, May 19, 2014
A Few Gardening Notes
1. Completely stealing from Anne at Preventing Grace and having no desire to consider the events of the last week in any clear focus, especially since everything is blurry anyway as I went to the eye doctor this morning for my regular checkup and still feel like my eyeballs are trying to crawl out of my head. I am definitely reminded of this scene from "A Clockwork Nebari" from Farscape:
Season 2, Episode 18, but I had to look it up. I really thought it was a Season 1 episode. I guess I'm losing some trivial details.
But I'm supposed to be writing about gardening.
2. For the past couple of years, each of the children are allowed to pick some flowers for themselves to love, even if they never actually water them. Alex has chosen marigolds the past few years but when I asked him what he wanted this year he said Purple Daisies. No idea where he saw them or why he changed his mind but I found a pot of them at our local hardware store a week ago when I was having a key made and instantly snatched them up. They are in a very handsome pot on the back patio.
Of course the pot is turquoise, but it was the last one Aldi had.
3. Miranda wanted sunflowers last year but I put her off because of the hassle then regretted it later in the season. So, this year, Grandma gave us the seeds and we (well, she helped a little) seeded them in good potting soil in Chinese food containers for a few weeks and then I dug a trench on the side of the house so that when they are taller, they will have somewhere to lean.
4. My irises are in bloom.
5. Last year my neighbor suggested an iris exchange program, She took some of my bulbs and gave me these:
In fact, there are so many varieties of iris in my neighborhood that I am currently collecting photos of all the different colors and sizes. So pretty.
6. So I really want to see Godzilla. There's a great article about what the monster means in The American Interest. I started thinking about this when I was out driving earlier, about how a society copes with the aftermath of a bad war, or when your side loses. I was reminded about America's sojourn in Vietnam and how horribly it went for everyone there, on all sides. It's apparently important to examine such disasters in the open because if you don't, they turn into giant monsters who decimate your city. Still, it's an interesting concept to consider. Your sins will always return to haunt you.
7. Carl Kasell retired from Wait Wait Don't Tell Me on Saturday. And everyone was sad. But as I keep telling Alex, no one lives forever.
We actually won when I played the show in December of 2005, but we couldn't decide on a script and then I got pregnant and then Alex was diagnosed and we forgot. They might still let me redeem my prize, though. At least, I think it was then. I would have to look it up in the archives.
And here's Jen.
Sunday, May 11, 2014
Kicking and Screaming
1. If you follow my life at all, you'll know that my husband and I bought smart phones nearly 2 years ago and I regularly use mine to do check my email, post things on Facebook, update my calendar, etc. However, until today, really, I've continued to use our ancient iPod's to play music anytime I'm out of the house (driving, walking, whatever) instead of putting my music on my phone like everyone else on the planet. What can I say? I hate change.
But the iPod's, being actually ancient (the white one is older than Miranda), have started to fail, so after my darling husband offered for the thousandth time to show me how to move music off of our server and onto my phone and I promised this week to actually do that. And so I have spent the last few hours sitting at the table, patiently adding the music I listen to most frequently and all my kids' favorites to my phone. I'm told most people using iTunes to manage their music; if you hadn't realized it by now, we are not most people. Our home server, which has the DVR and all of our video files, also holds all of our music so that we can play all music through the tv or on any laptop that's connected to the network. So the process of moving it from the server onto my phone is a little complicated, but after he showed me once and watched as I did it myself several times, a couple of albums at a time, I am confident I can do it on my own.
2. On Friday, my mother-in-law and I went to Longwood Gardens to enjoy the spring blooms. I took dozens of pictures and if you really want to look at all of them, you can check the gallery here. But the best of them are scattered throughout this post. Again, if you don't know, you can tell tulips are my favorite flower.
3. So Miranda's IEP meeting was on Tuesday. Yes, I am trying to avoid talking (writing) about it so I'm burying it in the middle of the blog post, surrounded by beautiful, distracting pictures.
The meeting went well. Everything is fine. We have a solid plan for next year.
But, her case manager is retiring. Thankfully, she's passing her duties off to another person in the building, so there will be continuity. And even though she'll have a new teacher for second grade next year, the special ed. teacher who helps her throughout the week will continue to supervise her. I have to remind myself that most students have new teachers every year. And that Miranda will be in the same building next year with a very supportive staff.
And, yet, it is hard to hear plainly all the ways she is behind. Her academic progress this year was outstanding, but behaviorally and socially, she falls farther behind every year. That is, the distance between her skills and those of her peers seems or maybe is a larger gap than the last time I measured it. And while kids in first grade are rather forgiving of those in the class who aren't "normal," they get crueler as the years go on.
At the present, Miranda chooses her own clothes and doesn't care if they match or fit together well or anything. Eventually, that's going to become a problem. And we decided she will go on the "big bus" next year, the regular size school bus that picks up and drops off all the kids on our block, instead of door to door service. That will be interesting. She will think it's awesome because then she can be with everyone else but I wonder how her behavior will be. But it's time to try.
Something else that was added to my To Do list at the meeting was scheduling play dates for Miranda with some of the kids in her class. Building these relationships outside of school will help her inside school, says her teacher. So I'm just going to set aside my introverted-ness and do this because it's good for her. I hate change.
4. Two ways we are spending our time in therapeutic ways this summer (with special needs kids, every moment is supposed to be therapy!!!) is joining the local pool and (we think) starting both kids in karate.
Going to the pool will be something I do with the kids in the afternoons after Alex gets home from summer school (he's in class Monday - Thursday from 8:30 - 11:30 am for the six weeks after 4th of July, although he'll miss the first week this year because of our California trip). Miranda did not qualify for summer school so that means I will have to be reading with her and making her practice her writing, all summer long. I'm going to have to come up with a daily schedule checklist thing to get us to do this every day when Alex is in school or we'll never do it.
The past two summers, Alex has joined some of his peers in an afternoon program that we paid cash for that was run by some of the teachers and aides that included all kids of activities like bowling, swimming, trips to the movies and restaurants; all things they need practice doing and behaving "normally." This year, the program is not being offered and a pool pass for the 3 of us will cost less, anyway. And this way, Miranda gets to have fun, too.
The problem of going to the pool with the two of them is that I have to protect everyone else from them. Alex usually swims on his own (maybe he will condescend to taking the swim exam this year so that he can swim in the deep end, which he is capable of doing) and talks to people occasionally. Miranda shoves herself into every social group she sees and sometimes that works and sometimes it doesn't. I never understood how important social skills are until I had kids who didn't come with them hardwired.
Karate is something we've been considering for quite some time. It is often recommended for kids on the spectrum. But it takes a lot of time out of your week if you want to make it financially worthwhile. But there is a dojo in the shopping center near us where Miranda's best friend takes classes and so I can talk to his mom (who also happens to be an aide in Alex's class) about whether or not it would work for us and who to talk to. Again, another step out of my comfort zone because it's new and different and would radically change our weekly schedule. But homework trauma has lessened in recent months and my parents are willing to help take them to and fro, so it might be worth it. I thought to start in the summer to ease our way into it.
But, again, I hate change. But reading a book at home or reading one in the dojo isn't terribly different; I can read almost anywhere.
5. No one had a good week, really. Both Marshall and I had IEP hangovers after Tuesday morning and I think the kids just sucked up all the anxiety in the environment and then acted out at school. Sigh. It's really hard to tell yourself to stop stressing, in a stressful situation, because you're only going to stress your kids out more by being stressed yourself. Talk about circular logic.
But I am thankful to have had a chance to have lunch out with a friend Wednesday, hang out with my mother Thursday and watch Strong Poison together for the first time in ages, and visit Longwood on Friday with my mother-in-law. And the ladies who clean my house came Friday. And I redid my nails on Saturday (still need to do my toes).
6. I didn't watch much television this week, except a casual look-in on the Phillies. I think both the new Spider-Man movie and Rio 2 are going to be viewed on DVD. Still, I expect to go see X-Men: Days of Future Past in theatres. And, finish up Person of Interest in the month of May.
By Tuesday, we'll have the last 4 episodes of Agents of S.H.I.E.L.D. sitting together on our DVR so we can watch them in one fell swoop. The show has been picked up again for next year, so I expect there will be a cliff hanger of some sort. Man, I hate those things.
I've spent most of the week reading my way through Amanda Quick novels, which are usually light and fun and only have 6 left. But I also need to read How to Master Your Marquis by Juliana Gray and The Heiress Effect by Courtney Milan because they are due back at the library this week. These authors do not write books that I classify as fluffy. The Duchess War by Milan, her first book in the Brothers Sinister series, was devastating. Excellent, but devastating. But having met the characters, I want to finish the story. Such is the mark of a good writer.
7. Something Other Than God: How I Passionately Sought Happiness and Accidentally Found It by Jennifer Fulwiler (of Conversion Diary) is now available and I'm hoping to win myself a copy! I can usually convince the library to get me most of the books I want to read but somehow I don't think this is on their list of books to buy this summer.
And here's Jen.
Monday, May 5, 2014
A Long List of the "I Should's"
1. I often frustrate my husband by refusing to write down my To Do List. Generally, being a specialist in Household Management, what I need to do surrounds me (unfolded clean laundry, sink full of dirty dishes, flower bed full of weeds, lawn in need of mowing) and yells at me regularly so I don't feel the need to make an actual list. I do what I can and stop when I'm tired. Or when something shiny walks by and distracts me.
However I have a growing list (in the back of my head) of things I need to do, doctor appointments for myself that need making, prescriptions I need to call for refills, but it's very easy to put those things off. Somehow taking care of myself always falls to the bottom of the list. And all of this is complicated by the fact that Miranda's IEP meeting is tomorrow morning.
I both look forward and dread these meetings. It's a great opportunity to evaluate this year and see how far we've come as well as look forward to what's planned for next year. Miranda has an excellent team of head teacher, special ed. teacher and Case Manager, women I like and trust and communicate with frequently. But it also means I have to look her disabilities straight in the face with no opportunity to look away and nothing to lessen the blow.
I usually survive emotionally by compartmentalizing and scheduling and proceduring and pragmatizing my life. I deal with each thing separately (Alex's anxiety or Miranda's refusal to get dressed) instead of looking at it rationally as a part of the whole child. We have procedures for morning and evenings, traveling and special events. This certainly makes it easier for my children to function, but it helps me as well. I don't want to look their diagnoses in the face every morning. I just want to start the pancakes and empty the dishwasher.
But tomorrow is our date with Miranda's team and I should have realized it was bugging me when I spent all of yesterday afternoon making cards (more than 40--Teacher Appreciation Week, Mother's Day, birthdays, get well, etc) and as soon as the children got on their buses this morning, I finished a book and took a nap, instead of looking at the next "I Should."
We don't expect bad news tomorrow. Miranda has done far better academically this year than we expected and the behavioral problems aren't a surprise. Her temper tantrums at 2 years old were impressive and her maturity has been delayed by her disabilities so she doesn't yet have the ability to yank herself back from the edge every time.
I know all of this. But I still dread the meeting.
2. I took the children to Sahara Sam's on Friday night for their Special Needs night which runs quarterly from 6-9 pm and it was a lot of fun. Of course, we came home exhausted but I'm glad we went. Without the crowds and music and other noises of a regular session there, Alex had a much better time. And I never had to worry about getting funny looks from other parents about his behavior. Or worrying that Miranda would get into trouble if she went off by herself. But if we do it again, I'm going to need prescription goggles. I always forget how dependent I am on my glasses until I can't wear them.
3. For my television show to finish for May, I've chosen Person of Interest. I stopped watching it in October because I accidentally saw a spoiler that they were going to kill off Taraji P. Henson's character and then didn't want to watch that happen. So, before Saturday, I had 13 episodes to watch. Now I only have 10. It was a Joss Whedon character kill; it made sense for the story but man, it hurt to watch.
4. On Friday my mother-in-law and I are going to make our annual trip to Longwood Gardens. So prepare yourself for lots and lots of pretty pictures, come next week. Best of all, the wisteria should be in bloom!
5. On Saturday, my darling husband gave three presentations at LOPSA-EAST, 2014, which is a peer group meeting for System Administrators. He did nothing else for the two weeks previous and came up with the coolest handouts, which I happily helped him to construct. I turned 60 of these:
into these:
I was very pleased with the final products and according to him, so were his audiences.
6. I'm hoping to see Rio 2 with my mother sometime this week. Miranda was all set to go with us last Saturday until she got cold feet. Maybe next time.
7. Something Other Than God: How I Passionately Sought Happiness and Accidentally Found It by Jennifer Fulwiler (of Conversion Diary) is now available and I'm hoping to win myself a copy! I can usually convince the library to get me most of the books I want to read but somehow I don't think this is on their list of books to buy this summer.
And here's Jen.
Saturday, April 26, 2014
Back to Normal (HA!) on Monday
1. We are wrapping up Spring Break and go back to our regular schedule tomorrow, really, since we'll have church at the usual time and I have Youth Group tomorrow night. Then back to a 6:10 am alarm Monday morning. We did a few fun things this week, the Garden State Discovery Museum on Tuesday and Johnson's Farm today, but Miranda had a low-grade fever that came and went (Monday and Wednesday) and Alex had a sore throat starting yesterday that we finally figured out was allergy-related, both of which kept us from running out somewhere fun every day. Miranda did get to see her best friend from kindergarten (he goes to a different elementary school now which is probably wise because we think these two are most likely to set the school afire if left alone together, but she misses him because I think he really understands her and accepts her for who she is) twice over break and both kids did 2 egg hunts (anyone want Easter candy? In about a week, I'm going to throw most of it away). Then there was the lovely Easter dinner with family and friends at my folks' place last Sunday where we feasted for hours and nearly rolled home.
I will be glad to be back in a routine where I know what's coming next and I don't have to drag everyone with me to the grocery store. Alex is often irritated when we make more than one stop to or from anywhere else and I am the queen of multiple stops; I don't want to leave the house to only go to one place. But I am going to hate getting up early. The children have been kind this week not to rouse me until 8:30. I'm sure they get up earlier; they just forage for themselves until I'm up. But it will not be a quiet week as my calendar has something for nearly every day.
9 more weeks of school. Then 10 days in San Diego. Then 5 weeks of summer school for Alex (possibly 3 for Miranda; we'll find out at her IEP meeting if she qualifies.) Then 2.5 weeks of more vacation. Then school starts again because it will be September. When I look forward, time seems to move slowly. But when I look back, it seems to have flitted by so quickly, when I wasn't looking.
2. Spring continues to bloom around here. Two years ago, my mother-in-law gave me some grape hyacinth bulbs from her yard and they look gorgeous this year:
Yesterday, Miranda and I planted some sunflower seeds in Chinese food containers to see if they would germinate. She loves sunflowers and if the seeds are good, I'm going to dig her a trench for them on the side of the house where there is both room and sun.
I did other gardening this week. My father helpfully hacked large pieces off of my hosta plants so they won't overshadow the callas when they bloom in June (the hostas and callas are all mixed together in the front bed). And I finally cut back the butterfly bushes, even though leaves had just started to show, so they are only head height at present. I wish the flowers weren't so beautiful but I love them and the kids love the butterflies. So I'll just have to trim them more frequently so my husband doesn't worry about them grabbing him every time he walks out the back door and heads for the garage. I wish I knew how to train them like the ones at Longwood Gardens, where they have a large, thick trunk and branches delicately falling down from that. I have a poor picture from my trip last year to show you what I mean:
Of course, that's like wishing I was a master gardener rather than the ersatz one I am now. I love my garden because it has enough grass (and weeds) for the children to play in and I have some flowers in bloom from February until the ground freezes in November. But it is rather haphazardly kept and nothing I grow is edible. I want flowers; I can buy vegetables.
My biggest job in upcoming weeks will be to disassemble the pallets that have been tied together for a dozen years to hold my compost heap mostly in the same place and install a new system. I'm going to transition to a bottomless container but it will be smaller and look ... tidier. I don't mind the rotting pallets but there have been complaints.
3. I was tired and pollen-oppressed last night so I watched a couple of fun movies requiring little thought to follow, Dredd and Hansel & Gretel: Witch Hunters. It was my second time for the former which I still like though it was gorier than I remembered and the latter was, well, exactly what the reviews said it was: campy with an almost nonexistent plot. But I still like the actors. If you've never seen it, The Unusuals was an excellent if abbreviated series on ABC from 2009 that completely sold me on Jeremy Renner. Even though the series was created as a vehicle for Amber Tamblyn, Renner stole it from her from the first moment he was on screen. And all of this is available from Amazon Prime streaming video.
4. One of my goals for this year is finishing things, like televisions series. I didn't manage to watch the last 3 episodes of Awake, but I did watch the end of Leverage. It was forgettable, but at least I crossed if off my list, only 1.4 years late. The best episode of the fifth season is "The Gimme a K Street Job" one from August, 2012. If you ever want to show someone, in 43 minutes, how Congress works, this is perfect. Scary and disgusting, but that's only because it's accurate.
5. If you missed it, Thursday was Take You Child to Work day. For the occasion, I took Miranda into the city to have lunch with daddy (it was Qdoba day) and get a tour of his floor and meet some of the people he works with. Something we've been emphasizing with her at home is that everyone has a boss; it's not just Miranda who gets bossed around all day by her bossy parents. So she met Marshall's direct supervisor as well as another man higher up the chain of command so she would have a better understanding of how her father answers to other people.
She was perfectly behaved the whole time. I think she was overawed by the big building and thousands of computers. And a whole new place she never had a picture of before. But it went well.
She chose the outfit: black Hawaiian dress and bright blue leggings with white flowers. I insisted on the pink shirt underneath. More color is always better with her.
6. Agents of S.H.I.E.L.D. is breaking my heart. Everything keeps going from bad to worse to even worse than that. Why did I think this was going to be some fluffy series that I could watch without calculating any emotional impact? It's produced by Joss Whedon. His series are never fluffy. It's like watching Doctor Who or Sherlock. I have to prepare myself for the experience. My favorite Buffy episodes are still "Surprise" and "Innocence" from Season 2; they are absolutely brilliant and still break my heart every time.
I did manage to watch 2 more episodes of Justified last weekend, but I still have 4 more to finish season 5. It's like mainlining adrenaline; it takes me hours to come down afterwards. This is why I never watched The Wire or Breaking Bad or any of their ilk; as excellent as I understand those series to be, I don't need my pulse racing for hours on end.
7. April is almost finished, our Autism Awareness month. I'm not sure if I wrote more about Autism but I did write more about us and about me, and Autism is intricately wound into our daily life. Passing for Normal, that is, behaving appropriately in public no matter the situation, will continue to challenge us, but I am grateful for everyone who is helping us along the way.
Here are some pictures from our trip to Johnson's Farm today:
This last one is my new favorite picture of Alex.
Here's Jen. Her new book, Something Other Than God: How I Passionately Sought Happiness and Accidentally Found It, comes out this week. I think I might have to purchase this one; I don't think the library is likely to buy it for me, like they do many of my other requests.
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